EmersonAilidh

Finally made a connection! Read on here that RLS can be triggered by an iron deficiency. It runs in my family & I'm anemic. I think I only experience it when I'm menstruating since I have even less iron than usual. Past two months support my little theory.

Thank you!! I emailed him today.. If I don't have a response by Tuesday I'm just gonna call. I hope I can get in!! Best of wishes to you. :)

Thank you all so much! So you think it's a good idea to see him, even only if just once??

Sorry for all of the posts lately. :/ P.A.N.D.A.S. doesn't take off for summer. -_____- Anyway. I've mostly been posting about my Mom's lack of support with my current exacerbation. So, today, when she told me that she booked us a trip to Chicago for two weeks in July (when I've been asking her to book a doctor's appointment, not a vacation, for weeks now...) I was about to lose it. My aunt is taking a vacation to New Zealand & we will be staying in her house looking after my aunt's son. An hour or two into my brooding it hit me; Dr. K is going to be practically down the street from where we are staying. I can't imagine my Mom denying me an appointment with him. She knows I've e-mailed him & she knows what a revolutionary, for lack of better term, he is. My only question is.. Would there be any point?? I would go in, tell him what was wrong, maybe receive some insight, & then head back to Texas. I think that just talking to a doctor actually educated on P.A.N.D.A.S. would be so great, really. Even if we weren't actually able to get anything accomplished. Is there anything he could do in one appointment?? I'm leaving for Chicago on July 7th, only eleven days away, & I will be there until the 21st. Could I even get an appointment?? If I do end up being able to see him, it would be such a blessing. If not... Then I can't help but feeling like two more weeks are going to be wasted for me.

I can only eat lentils, beans, & eggs out of those, but I need those for protein anyway so I'll be sure to eat more of them! I'll look into those around my area! That sounds interesting. & I'm glad to hear that you're feeling better! & the day & night thing makes sense! I hadn't thought of it like that before. Then again, this is P.A.N.D.A.S. we're dealing with here so I suppose nothing really has to make sense, hahah. Best of wishes to you & your kids!

I'm happy to hear your son's doing well! I don't think I take in much iron at all, actually. I'm vegetarian & gluten-free. How do you make sure your son gets enough??

I am anemic, as a matter of fact. I used to take Feosol supplements (can't remember the dose) but with the Narcolepsy symptoms keeping me fatigued anyway I didn't see much point & stopped. I really can't remember what day it happened last month, but now that I know it was on the 25th/26th (depending on how you look at it) I'll keep a look out next month. With how rarely it happens I can't really say whether or not iron supplements made a difference when I was taking them. Over the years I can't even recall how much blood I've had drawn, but I've never seen an alternative/integrative medicine doctor. What do they do, exactly?? I read the Stanford paper a week or two back & needless to say, I was very pleased. I hope your son feels better! My cataplectic episode was my first symptom, actually. I hope your son never has one though! My main question is really just, is there a way that Narcolepsy & RLS could both be found in one person??

I've mentioned before on here that I've been experiencing Narcoleptic symptoms for a little over a year now. Only one full blown Catpalectic episode (the difference between Narcolepsy & Cataplexy is important), & that was in April of 2009. While sitting at my desk in English class I just passed out. We had a substitute that day & I'm not too terribly social in school, so no one really noticed until the bell rang & I hadn't moved. Had my first depersonalization episode when it took five students to shake me awake. Besides that, I am just always tired. There's no exception. It's not uncommon at all for me to just.. Fall asleep without trying. I won't realize until I wake up/someone wakes me up that I even went to sleep. I have had multiple episodes of sleep paralysis, although I can't recall any in the past seven months or so, I experience hypnagogic hallucinations very frequently, & as mentioned in the previous paragraphy, I have experienced some episodes of depersonalization (as if my twitching wasn't scaring my teachers enough!). I know when I'm going to bed that I'm going to be out for twelve hours, which is why even now in the summer I try not to stay up any later than one AM. In the event that I'm woken up before the twelve hour mark (which can go as far as sixteen hours if left undisturbed), I'm basically in a stupor, disoriented with a headache so pounding that I can hardly focus on anything. This was especially difficult during school. School here starts at 7:15 AM. Which means waking up at 5:30 AM for me. Even if I were to come home & immediately do my homework, eat, shower, & all of that, there's just no way that I could be asleep by 5:30 or even 6:30! So I made up by sleeping through class. Each class at my school is an hour & a half long, & more often than not (unless I had a particular reason not to) you could find me sleeping through all of them. My teachers knew better than to wake me up, too. I can't even understand anything at all when I'm woken up. It's seriously like everyone is speaking an entirely different language I'm so tired sometimes. My speech class first semester of last year was my first period, when I was my absolute LEAST alert or awake. We had to write a journal entry over a topic first thing every morning. I found myself failing all of them because I would "daze off" all the time & write in what quite simply wasn't English. It would either be scribbles or just totally nonsensical. Now that it's summer, most days I'll sleep from one AM to one PM. I'm normally ready for a nap by 3, & most days I take one for about an hour. More than likely, I'll sleep for another two hours before actually going to bed. Most days it's from six to eight PM. It's so hard for me to convince people that I'm not just lazy. I CAN'T STAY AWAKE!! However, consistently ONE night a month for the past few months, I can't sleep at all. No naps. No twelve hour rests. No sleep at all. Why? Because my legs HURT. This is one of those nights, hence the 6 AM post, haha. I'm just as exhausted as ever, typing is a chore & my eyelids are struggling, but for once, sleep just won't come my way. Now, my Dad was diagnosed with Narcolepsy twenty years ago. There have been a few times where my sister & I have had to wake him up at the wheel his is so bad at times. But he was also diagnosed with a mixed sleep apnea ten years ago. I wasn't even aware that these conditions could coexist.. He was hospitalized twentyfour times last year for complications with the two. I'm fairly confident that apnea has nothing to do with my situation though. I've heard how my Dad wakes up, it's anything but quiet, & when I used to live with my bestfriend we shared a bed & she never heard anything like that. Just my nightly enthusiastic sleeptalking & sleepwalking, hahaha. I had an EEG in November to test for seizures in my sleep that showed "abnormal brain activity" that wasn't Epilepsy (Again. I could have told you that. Shared a bed with someone for months.. Think they would have noticed seizures). Of course, it was then that my insurance gave out & I wasn't able to visit my neurologist until this May. At that visit, he scheduled me for a series of tests IN FEBRUARY. NINE MONTHS AWAY. I told him to forget it. So, I haven't yet gotten to be tested for Narcolepsy, even though there's not a doubt in my mind, & I don't think there's a test for RLS anyway. On the other hand, my Mom, Grandma, & two of my uncles have Restless Leg Syndrome, which I know is hereditary. I know what I'm feeling on nights like this fits the description of RLS, & my Mom has even given me a dose of her Ropinirole before that helped immensely. My question is... How can this be?? How can I be experiencing one thing that won't let me stay awake, & one thing that won't let me sleep?? & also, does anyone know if there's a connection between RLS & P.A.N.D.A.S.? I am perplexed right now, in all honesty.

Thank YOU. Even though I've never even met anyone on the forum, it is such a comfort to know that after a bad day all I have to do is click the "ACN" button on my internet browser & I will have someone to talk to. You commented on one of those "bad day" posts of mine from tonight, as a matter of fact. Even though I don't have a supportive family here at home, it's such a joy to know that I at least have one here on the forum. <3

Haven't seen much improvement, but I did get her to post the Pepsi Refresh Voting App on her FaceBook. Tonight is "poker night" at our house & I am feeling especially introverted today so I've holed up in my room with a Smithsonian "Grow Your Own Crystals!" kit. Sorry for the random update. Just hasn't been a good past couple weeks & I still don't know what to do. I sent her the list of supportive doctors that I found on here two weeks ago & she hasn't even called or checked insurance or anything. I think she's forgotten, honestly. I'm feeling hopeless. It's summer & I'm supposed to be having fun, but I find myself making excuses to stay in on the occasion that I do get invited to do something just because I don't. feel. like. being. around. anyone. When I do go see my friends, I can't bring myself to talk. I can't explain it. I've always been incredibly outgoing, I could make friends with anyone that came my way, & now I'm just terrified to even open my mouth around the friends that I do have. I don't know what it is. When I do talk, it's about something weird & everyone just stares at me. I went on a tangent about parasites the other day & almost cried when I realized everyone was staring at me. This is the first time in my P.A.N.D.A.S. journey where it feels like I've completely forgotten how to socialize. All I want to do is stay home & read or watch Discovery Health Channel. I really am sorry for all of these discouraging posts, but (especially with this one), I'm just looking for advice. I just wanna feel better. :/

I don't know if it's this way everywhere but the Super Wal-Mart by us actually has a Gluten free frozen section. The little meals are kinda expensive, but it's nice to have a few. There's also a brand called Amy's Kitchen that most (but not all) Krogers carries that have a few gluten free items. All completely dairy & meat free, too. Not sure if your family eats meat or dairy, but they taste good even to my friends who eat meat! I agree with what everyone else has said. I admittedly haven't been doing the diet for long but fresh veggies & fruits have been a lifesaver. Also, I've been eating a lot of potatoes (baked, mashed, however you want them) & rice as well. It's really yummy just to throw some steamed rice & veggies together with salt & pepper. Good luck!

The only treatment I've had as of yet (besides the diet) has been pharmaceuticals, so I don't know what to tell you about knowing which one is working. :/ But as for the diet, it couldn't hurt! I've seen a minor improvement in the severity of my mental symptoms & a huge improvement in my physical ones & it's only been two weeks. A good friend of mine has a brother who is severely autistic, & they've seen a big connection between gluten & the severity of his symptoms. I'm no doctor, & I don't exactly know what being an "Autism Spectrum Disorder" implies, but I imagine that's why it's helped me. Melatonin, Benadryl, & things like that never worked for me either. But, "It takes time to get this right" turned into four & a half years for me, so if there's an avenue that you have more faith in, by all means, pursue it. Which is not at all to discourage you from supplements & things like that, but if your son has a chance to get rid of his P.A.N.D.A.S. I'd do whatever it took. Once again, best of luck! <3

I'm a patient. I've been dealing with P.A.N.D.A.S. for five years now. What is the tryptophan being administered for?? I have really extreme panics, not so much "rages", & had (although now it's quite the opposite) issues with insomnia for years. I really can't remember what dosage I was taking, but I honestly didn't see much results from Tryptophan. I didn't have it with Serotonin though, so I hope it helps your son! Also, I've been gluten-free for a little over two weeks now. Does he have stomach pain? It's probably too soon for me to really judge anything with this diet, but I have such high hopes that I can hardly help myself. I have only had two episodes of abdominal pain since I cut out gluten, when I am used to having them multiple times a day. Although, I must admit, I did take two bites of a friend's Macadmia nut cookie yesterday. Just couldn't help myself, haha. I've been going through a particularly bad exacerbation lately, & I can't say that I've seen a change in my lack of social motivation (YET. That could very well change), but with the exception of my Narcoleptic symptoms I HAVE been feeling a bit better so far as far as compulsions, tics, & general attitude/happiness go. I'm vegetarian, so gluten-free has admittedly proven to be fairly difficult to adjust to (soy protein like Morningstar Farms products is nothing but wheat gluten), but I don't think it would be too terribly hard if you have meat in your diet! Best of luck to you & your son.

I've been having Narcoleptic symptoms for over a year no. If I lay down to sleep & I have no reason to force myself to wake up the next morning, I sleep twelve-sixteen hours everytime. Mostly just twelve, though. & I've only ever had pharmaceutical treatment (my Neurologist is doubtful of P.A.N.D.A.S.), but I can honestly say that it helped make my twitches a whole lot more manageable. I have been pill free for about half a year now though! I like that. That story almost made me cry. Thank you for that. & I try to be understanding with my Mom as much as possible, because just like she can't imagine what I'm going through, I can't imagine how difficult it must be to be the parent in this situation. Every now & then, like yesterday at the grocery store, I just lose it though. Today I am better, & my Mom & I are about to watch TV. I'm gonna ask her to watch the Mystery Diagnosis with me. Thank you! This forum has given me the "friend" to talk to that I've always wanted. Even if I don't really know anyone on here, it's so helpful just to have someone that I know understands in a big way. Talking to my friends often just leaves me feeling more "messed up" than before because they never know what to say, & I'm left just as confused as ever.. Only now I feel like a freak. But, that's changed since I got on here. <3 Someone pmed me about this.. My Mom won't get an account on the forum. I've asked her to & she's just flatout not interested. If I were to come out & say "Hey, one of the parents on the forum wants to talk to you." I can't imagine her reacting well. I don't think it's so much that she's not understanding because her coping mechanism of choice is denial, I think that she honestly doesn't grasp the true weight of what we're dealing with here. & I don't know how to make her realize that P.A.N.D.A.S. is SOOOO much more than what it says on Wikipedia! Haha. If I were to mention having vented on the forum to other P.A.N.D.A.S. patients, I can't imagine her reacting well. But thank you very much for your offer!

I've never thought of it like that. Thank you!

Thank you all. When I posted this I felt really really alone, but I feel better now thanks to these replies. The more I come on this forum the more I realize that even if my family isn't as reliable or informed as I would like them to be, there's always someone who understands on here. Thank you for putting a smile on my face. <3 I don't know if asking my Mom to get an account on here would be good or bad. On one hand, it might help her get more interested or at least help her learn about what it is that I really have, but on the other hand it would be a huge disappointment if she made an account & didn't really do anything. She makes jokes about how often I'm on the computer, but she doesn't realize that if I'm on the computer.. I'm on here. Helping & getting helped. When I come to her with new information, like the Stanford paper finding the Strep immunity associated with Narcolepsy, I don't think she really grasps just what a big deal it is, even if just to me. She knows I have P.A.N.D.A.S., obviously, but beyond the generic "antibodies attack the brain & give patients tics & OCD" part, I don't think she knows nearly as much as she could. She definitely doesn't understand how it effects my moods. This morning when she wasn't home I tried to fry an egg. It didn't go so well, & by the time that the third yolk broke I couldn't stop crying. When I told her about it she just said "Why? That's weird..." & chuckled. I don't know how to explain to her that I'm more than just a little "off" when it comes to cognition.

I have yet to post something like this, but I'm feeling particularly hopeless tonight. I've been on a gluten free diet for about two weeks now that has worked miracles with the stomach pains that I've had for years. Today, after a trip to the grocery store, my Mother informed me that I'd have to be paying for my food from now on. I'm fifteen... I have no job & couldn't get one if I tried... I'm sorry that my appointments & pills have cost you so much. I'm sorry that you have to come into school to explain my disease to my teachers year after year. I'm sorry that I can't control my moods. I'm sorry that me finally reaching out to get REAL treatment after five years is such an inconvenience. I'm sorry that I am such a financial burden, when your cigarette habit & $120 jeans obviously aren't. I'm sorry that researching P.A.N.D.A.S. takes more time than you have, time that's mostly occupied by FarmVille & soap operas (which are so much more important). I'm sorry that I Tivoed Mystery Diagnosis for you when I knew you were too busy to spend half an hour watching something I was so happy about. I'm sorry I'm sick, Mom. As much joy as this forum has given me, seeing all of you parents fighting so hard for your children makes me sad every now & then. I don't mean to bring the mood down or be pessimistic, but I just don't know anyone who would understand..

There are far too many people who are so jaded in their own "research" that they fail to accept what's right in front of them. There's no bacteria caused mental illness, really? Because that's exactly what this is. AGH. I have supportive, albeit not well informed, family, & I'm very grateful for that. I'm sorry you had to deal with that. People, doctors included, have told me to my face that P.A.N.D.A.S. is a myth. I just find it funny by now. I'm living proof that it DOES, haha. Well, anyway, you always have understanding people like us on the forum!

[quuote] It's an infectious disease dr who we got an appt with through a ped neurologist that diagnosed it. his name is Dr. Murphey. He is with Cooke Childrens hospital. I've never seen Dr. Murphey but Cook's Children's is where I've gone for five years now for P.A.N.D.A.S. & for years before that for other things. It's a great hospital. I hope it goes well! <3

Oh. There is a Fort Worth in Texas too, & we have a lot of P.A.N.D.A.S. cases. I was going to send you a list of doctors, but it turns out you're not around here. It is in Texas Oh, my bad. I feel really dumb now, haha. Who are you going to see??

I'm in north Texas in a town called Mansfield kind of south of Dallas & Fort Worth. I wouldn't recommend the neurologist that I'm currently seeing but this is a list of the doctors I know of that deal with P.A.N.D.A.S. Dr. Charles Goebel (diagnoses but doesn’t treat) Pediatric Specialists of Plano 3405 Midway Road Suite 650 Plano, TX 75093 (972) 473-7777 http://www.facebook.com/l/582dc;www.psopkids.com Roger Skiles MD http://www.stonebriarent.com/ Stonebriar Ear, Nose & Throat 5575 Warren Parkway Suite 104 Frisco, Texas 75034 (469) 633 - 9595 Fax: (469) 633 - 9460 Debra Phelan, Ph.D. Clinical Psychologist 12820 Hillcrest Road, Suite C218 Dallas, Texas 75230 (214) 848-2686 Dr. Bambi Hoefner 3275 West Alabama Street SUITE B Houston, TX 77098 (713) 524-4477 Dr. David Owen, M.D. Pediatric Neurologist Medical City Dallas 7777 Forest Lane, Suite A307 Dallas, TX 75230-2507 972-566-8600 Dr. Seshagiri Rao, MD Allergy, Asthma and Immune Disorders 3016 Communication Parkway, Suite 100 Plano, TX 75093-8906 972-964-7373 I don't know how close any of those are to you & I have yet to see any (although I'm making an appointment with Own &/or Phelan soon), but hope that helps!

Oh. There is a Fort Worth in Texas too, & we have a lot of P.A.N.D.A.S. cases. I was going to send you a list of doctors, but it turns out you're not around here.

Are you in Fort Worth Texas??

Thank you! I will get on that tomorrow. This forum provided me with a list of doctors that are P.A.N.D.A.S. savvy, so I hope to just be able to go that route soon.

I'm fairly confident that I'm not lactose intolerant. I was totally vegan for about six months two years ago & it did nothing for the pain. Nowadays I only eat cheese as far as dairy products go anyway, & that's not often. I'm also fairly confident that the fatigue isn't related to my thyroid. My neurologist was stuck on "IT'S YOUR THYROID!" for quite a while, & two sets of extensive bloodwork in the past nine months have come back completely & totally normal. Right now our main guess is really that it's either anemia (which we're almost certain I have) or just my Narcolepsy symptoms, since the fatigue came on so suddenly. Thank you for your advice!